United Brachial Plexus Network, Inc.

Jenny,

I just wanted to let you know I saw your post. Elena is such a beautiful girl and is so smart:) Kelsey was saying yesterday that she misses her, and maybe this is why she brought it up out of the blue. I don't know if this will help or not, but here goes. Kelsey can't use her hand at all. We have conversations all the time about how she CAN do things the other kids do, but she has to find her OWN way of doing it. It is a struggle every day for our kids. In Kelsey's pe class they do a lot of dancing with ribbons. Kelsey says she can't do it like the other kids and it upsets her because they can use 2 ribbons and she can only use one. I asked her to figure out a way to do it the way SHE wants to that will look like the other kids. She finally asked her pe teacher to tie the ribbon to her left wrist so she can move both ribbons. She solved her own problem. I think that makes a HUGE difference in attitude about future problems.

Elena is strong and very positive. Just give her your support as you have done, and give her time to figure it out for herself. My guess is that she will go back to cheering. I have this vivid picture in my mind of that smiling girl cheering her heart out.

Keep your chin up. Hopefully today is a brighter one for you and Elena

Much love,

Nancy

Great response Gabby... it really helps to hear from you and keep cheering this post is the best cheer I have ever read thanks for posting it.
Jenny
I am adult/obpi and have had to deal with many of life's challenges from childhood to grandparent tasks.

If I ever had to choose a theme song for obpi children it would be "My Way". It is great to have pt/ot teaching and parents helping but we really need to solve our own challenges as soon as we can.

Obpi children travel life with two constant companions called challenge and frustration. By learning to view things with creative eyes we learn to master both challenge and frustration and keep them from ruling our daily lives... The more we learn to deal with these frustrations and challenges the more creative we become and as time goes by we quickly assess a situation and figure out how we will accomplish any task.

I believe (said with some modesty) that bpi children become creative and persistent because we have to. We develop the creative side of our nature. We often attempt things just to see if we can do them, not because we are interested. If we were not challenged to do the ordinary things in life we may never have explored and developed in other areas. I never look at something new and wonder if I want to do it – my first thought is, how can I do that! Any thing new is always a challenge. Learning to do something new on our own slowly become a way of life for obpi. I was taught to believe that I can do anything I put my mind to. This belief has served me well in life


While the same nerves may be impacted each injury responds and heals in different ways and this makes each of us very unique just like our fingerprints.


One of the hardest things for my family and friends to understand was that no one could teach me how to do ordinary things I had to find my own way. I always think of myself as not coming into this world with a set of instructions. It is still often frustrating for me to try to convince others that I must be able to do tasks my way. My family and some friends still think I am just stubborn and I guess I am. But if I was not persistent and stubborn I would never have moved at all. The greatest gift my Mom gave me was to let me solve things in my own way. Of course she did it gradually there were times when she had to step in for safety and self worth when the odds were really against me. Its no wonder I love the song My Way.

Kath

Jenny,
My heart goes out to you and your husband and to Elena. I have had my bpi since birth and am 49 years old now. Elementary school was a terrible experience for me mainly because there were so many things I couldn't do and I was not particularly good at anything that I could do. My father would scream at me: he wanted me to try regardless of whether I could do it right or not, and try meant don't give up. He would constantly ridicule me as a quitter, "the worst thing I could be" he'd say, and try to force me to keep trying. There are some things that I just can't do and there are some things that I found I can do later on in life that I couldn't do when I was a child – like playing softball. When I say, "can do", I mean "sort of" - like softball. Sometimes it feels like we obpi people are forced not to quit even though we are faced with the inevitable fact of our inability in so many things. I guess that's ok but she is going to cry a lot just like I did when I was her age and discovering the inabilities. If her experience is anything like mine was, and I suspect it is, then I would describe it as a nervous breakdown. 4 1/2 is really to young an age for any child to know for sure what he/she wants to do, but in Elena's situation, she is going to be faced with the much more difficult dilemma that she often can't do what she wants to do. This is a life shattering experience for her (and parents) and it's an experience that she must face every day of her life for the rest of her life. You said in your message "She can do it but has a little trouble." Really? Don't be so sure. Elena has to find her own way. Practice will not necessarily make her able. You mentioned "She tends to use her injury as an excuse when something is too hard." Her injury is a valid reason in many cases: not an excuse. How did you manage to cram ballet, soccer, swimming, and cheerleading into her life all before the age of 4 1/2. Maybe you're pushing to hard. Are all the kids in her kindergarten class doing all of those things too? Don't get me wrong - I'm not a quitter. I can do mechanical repairs but not competitively. I can play a guitar, but not competitively. I can play softball, but not competitively. You see what I mean? Why are the demands on her at age 4 so high? I needed therapy when I was in elementary school and fortunately I got it. It didn't make me more able but it did help me to face my own true experience for what it is. We obpi sufferers like everyone else try to show ourselves in the best light that we can. I "can" do this and that, but that hasn't made me more able than I am. Work is hard for me to find and harder to keep. I have an A.S. degree, graduated with honors, made deans list three times in two years. I'm smart and I have about 20 years of experience in retail hardware, but when my parents closed the hardware store 7 years ago I became unemployed except for some temp-agency work. I'm telling you about my present experience in order to make the point that the problems associated with "inabitity" really don't go away. Elena is traumatized and she may need therapy in the future to learn how to live with the rejection and the inabilities. I hope this hasn't sounded to harsh. I'm not saying it's hopeless, just that there are real limits.
P.S. My yahoo group ERBSBPP is about addressing the problem of people with obpi being able to support themselves. Those (obpi) of us who are ensconced in financial support of our family can temporarily ignore the problem, but the problem doesn't go away. We obpi sufferers should be entitled to some kind of support from disability insurance but most of us are not entitled to any compensation. To visit my group you will need to establish a free yahoo e-mail address and then click on yahoo's group feature and type ERBSBPP in the search box, and hit enter. Now click on the blue ERBSBPP link. On my groups home page click "join this group". It's completely free. Go to the bottom of the page that appears and click join. There are lot's of links to other bpp information and the message board is about trying to improve the lives financially of people with obpi.
Good Luck!

Thank you all for your words of encouragement. To hear personal accounts, helps in my decision to keep her in cheerleading. I pray blessing upon all of you for your encouragement and time to talk to me. Thank you. By the way, Elena just told me last night "Mommy I want to go back...to cheerleading."

I have never pushed Elena to do all the things I listed...She is the one who wanted to try. She would try it and decide hmmm I don't think I like it Mom but cheerleading is the only one thing that lights her face up. I mentioned also that I would never want to push my daughter. I never will. She is just like me...wants to try everything just to try it. Now she thinks she might want to do soccer. Most of the things she did.. were conditional training things anyway not team related. Although I understand where you are coming from, I will take some of your advice and keep it close.

Thanks.